flare ups

[dtom102]

Hi everyone. My name is Debra and I live in the UK. I don't have Wegeners but my 71 year old father has it. He was diagnosed in 2004. In fact, I looked on the Internet and told him that I thought he had Wegeners before he was even diagnosed. He's been through some really tough times but he's a brave man and never complains. A few years ago my father felt he was having a flare but his consultant told him he wasn't because his blood tests hadn't changed. Consequently it turned out that he was actually having a flare but by the time they realised, his nose had collapsed. For the past few weeks he has been feeling ill and said he thinks it's a flare but his new consultant says his blood tests are normal. My dad obviously knows the symptoms of a flare but nothing is being done about it. Had anyone else had a flare even though their blood tests were ok? Thank you. Debra.

[Pete]

Hello Debra!

GPA/Wegener's can be tough to treat and manage. I know nothing of the UK's medical service, but if your Dad could get a GPA specialist at Addenbrooke's to evaluate him, that would be a huge plus. Perhaps some of our UK weggies will chime in with more info.

Good luck and better health to your Dad!

[JeanMarie]

I think this works both ways. You can feel good and your labs suddenly look awful or you can feel sick and your labs are still OK. Either way it can be a flare. Pete's right, wegs is tough and finding a specialist would be helpful. I hope your Dad feels better soon.

[annekat]

Hi, Debra, and welcome! I believe this has happened to me. I haven't had really severe flares, but have had them twice, both during the winter. Both times, I felt them coming on before my blood work showed anything out of the ordinary. So, as they got worse, I got to go back to the doc and say "I told you so!" I think it has just happened again, with the beginnings of a relatively very mild flare. The doc gave me permission to take some extra prednisone for a week or two at my own discretion, even though he didn't think much was going on. I think it has helped and may have turned things around. It's unfortunate that your dad's nose collapsed under those circumstances. (Mine was already collapsed, early on when I was initially sick.) The upshot of all this is, we as Wegener's patients really become tuned in to how we feel and when things might be backsliding. Docs could give us more credit for that. I wish the best for your dad and hope he can get with a really good specialist like the ones at Addenbrooke's, if he hasn't already. Please keep us posted on how he's doing, and keep in touch in general! This is the greatest forum that I ever could have imagined when I was first diagnosed, and it has made a huge difference in how I've handled having WG.

[dtom102]

Thank you all so much for your replies. So appreciated. It gives me more info to tell my father so he can get some help. ☺

[MikeG-2012]

Had anyone else had a flare even though their blood tests were ok? Thank you. Debra.

Absolutely! My blood was normal, and I had a flare, and now, my lungs have scar tissue thanks to the lesions that were created during the flare up. Sinuses have more damage than they did too. So don't let the docs dismiss this as not being a flare. they happen when blood work comes back normal!

[dtom102]

for that Mike. My dad goes to see his consultant next week so he'll be in a better position now to hopefully be heard! xxx